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I'm feeling a little overwhelmed with so much info, today was my first day starting meds and my first post, never have in the past. I decided to take part in a research study taking truvada once a day and viramune once a day for the first 2 weeks. After the second week instead of taking the viramune 2x a day as would be the normal process, I will begin taking the double dosage of viramune in one pill. I'm just wondering was this a good idea especially since it's my first time taking meds? Also what has been the side effects any of you have been on the regular combo(1 truvada & 2 viramune a day) ? My cd4 counts were 174 & vl was 15k... Thanx for sharing any thoughts... Rene

This is an unnecessary study. Unless you need to be in the study to access treatment, or want to be in it for the experience, the advantage to you is nil. Viramune 1 x day will work for most people, we already know this.

Hi Rene,Welcome to the forums. I am taking 1truvada and 2 viramune combo. I started them on 18apr08. and have experienced no side effects I can attribute to the combo.

It is difficult at first as there seems to be a compulsion to inform that is always followed by the statement "I know this is all overwhelming, but eventually it will be clear". And this is becoming the case with me.

Instead of trying to take everything all in at once and short circuiting my brain, I am now trying to concentrate on one thing until I get an understanding of it and then move on to learning something else.

Ex: I used to sit and listen to what they were throwing at me until it started just going in one ear and out the other. Then, I started writing it down. I started with keeping track of my blood pressure, CD4, and VL numbers....

When they saw me writing, they would slow down and even write some info for me. I guess, dealing with many patients in varying stages of treatment, they tend to think that we are all on the same page sometimes.

My taking out pen and paper, seems to be a signal to them to ...hey slow down...I'm new to this...

Matt,I have never heard about only needing one viramune a day. Where would I learn more about this so I can bring it up to the Doc?

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"I'm not done yet"....Glen Campbell

"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Ps: I take my viramune twice a day. I tried at one time per doctors instructions to take both pills together, but it didn't work right for me. Did it that way for about a month, and then went back to one viramune every 12 hours.

Ray,Thank you for the link. I too, take my viramune every 12 hours. If I read the info correctly, though once a day if effective, it is to my advantage to take the twice a day to arrive at a non detectable VL faster?

Logged

"I'm not done yet"....Glen Campbell

"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

Viramune is prescribed as 2 tablets a day after the 1st two weeks. Usually this is taken in two separate doses. But sometimes people take it all in one go, hence me saying "Viramune 1 x day" -- I did not mean just 1 tablet!

This is an unnecessary study. Unless you need to be in the study to access treatment, or want to be in it for the experience, the advantage to you is nil. Viramune 1 x day will work for most people, we already know this.

Hello and welcome btw

- matt

I understand, thanks for the clarification.

Logged

"I'm not done yet"....Glen Campbell

"I may not be exactly where I want to be, but I sure as Hell am not where I was" Wynnona Judd

Diagnosed/HIV1993AZTNorvir1994-2001Crixivan/Epivir/ZeritNo Meds for 7 Years

I think what MiamiRene is referring to is a new Extended-Release Viramune once-daily pill, not exactly a double dosage. At least, that is the clinical trial I am participating in starting next week. My doc said it is slowly released over a 24 hour period.

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October 2007 - Chose love/stupidity over protection23 April - Diagnosed30 April - CD4: 364/22.1% VL: 2,19811 July - Started Viramune/Truvada13 August - Undetectable

This is from the drug section-( From this site) Just a little more clarification :

"What is known about Viramune?

Taking Viramune is a two-step process. For the first two weeks (14 days) of treatment, the dose is one 200mg tablet once a day. Two weeks after starting treatment, the dose of Viramune is increased to one 200mg tablet twice a day. Following this schedule—which you should do under your doctor's guidance—can reduce the chance of developing a rash or other side effects.

It might be possible to take Viramune only once a day. This would involving taking one 200mg tablet, once a day, for two weeks, followed by two 200mg tablets, also once a day, thereafter. Researchers are now testing the safety and effectiveness of this option—it has not yet recommended by any experts and has not yet been evaluated by the U.S. Food and Drug Administration"

a new study taking Extended-Release Viramune once-daily pill that is released over 24hrs

We'll have to stay in touch since we're doing the same trial I am doing intake next week and hopeful will start dosing soon after. How fast did the study's lab get your genotype done? I am hoping it doesn't take a month.

Logged

October 2007 - Chose love/stupidity over protection23 April - Diagnosed30 April - CD4: 364/22.1% VL: 2,19811 July - Started Viramune/Truvada13 August - Undetectable

I'm enrolled in the same clinical trial as you, so we'll all have to compare notes. I'm waiting for my genotype results to come back (they're supposed to be back today, exactly three weeks after blood was drawn). I don't have great insurance coverage -- $1,500 annual cap on prescription coverage -- so having the costs of my meds covered for the first year (and potentially for three years) was a huge incentive for me to participate. But I was drawn to Viramune based on everything I read about it. Let's hope it works well for all of us!

Hello to all, I am part of the same study in Germany, as my Doc explain to my, most people take the two Viramune pills at one of course that is not suggested neither from Boehringer Ingelheim -the producing company- nor from the Doctors. So they do this study to find out if taking on pill per day with 400mg is better than taking two per day 200mg per pill . Until now I have no side effects 3 weeks after I started. I did took part because I would have , in the begging at least / better care, I do something very small to help in the developing of drugs and my doctor is greatfull. The financial aspect is nonexisting because in Germany you take your meds for almost free! I Know that's not the case in the states and with my financial status having been living in the states I would never been able to pay for meds.take care

Just want to say that, as part of this clinical trial, I started Truvada and Viramune last Tuesday, and have had absolutely no problems thus far. I'm currently taking only a half dose of Viramune, as the dosing guidelines recommend, and I won't be on a full dose until next Tuesday. But so far, so good. Given the minimal side effects of Viramune, I'm not sure why it's not considered as a first line treatment more often. I'll keep y'all posted on how it goes as I go up to the full dosage. Cheers!

got my new stats today and the meds are working so far... good update my viral load went down from 30,500 to 305 and my cd4 went up from 133 to 240 so good improvement and have no side effects from the meds at all feeling great. This was with only 2 weeks into the study & only the hlaf dosage of the viramune my next results with full dosage get back in another 2weeks, will let you guys know how things are. Anyone getting any results in who are on the same study ? let me know & stay in touch.

I'm now almost a month into this study, and I'm delighted with the way things are going. After the two week phase-in period (during which I took only a half dose of Viramune), my viral load fell from 9,030 to 133, and my CD4 rose from 166 to 272. And no side effects whatsoever. None. I go in tomorrow to get my four-week labs drawn, and I just hope the positive trends continue. This has been a great combo for me so far, and I encourage others to consider it as well. Cheers!

I just got the word that I'm undetectable, just one short month after I started participating in this Viramune + Truvada clinical trial. That's the good news. The bad news is that my CD4 count (which had risen from 166 to 272 after the first two weeks on the combo) actually dropped to 217 after four weeks of treatment. I admit, however, that, immediately before my most recent labs were drawn, I spent 10 days on a booze-filled, workout-free, sleep-deprived Atlantis Cruise in Europe, so perhaps that has something to do with my CD4's going down a bit. I'm just hoping that they start heading back up in the right direction when I go back in in a couple of weeks.

Well I got my new labs last week the good news is that my VL has dropped to 84, but the not so great news is that my CD4's dropped aswell after going up just like you Nashvegas. My new CD4 count went down from 240 to 179, so I am a little worried. My doc told me that if the VL is still going down I shouldn't worry too much but I am and not only b/c my cd count went down again but 2 days after getting those results the doc calls me and tells me I need to go into the office to do some labs again that something in my blood is elevated. I don't know what exactly yet but I will find out tomorrow Tuesday when I see the doc and he explains it all to me. I will keep you guys informed, trying to hope for the best here .....

I certainly know how you feel. But hang in there, and hopefully your CD4's will start rising again soon. I just had blood drawn for my six-weeks labs, so I'll know in a couple of days whether my t-cells are on an upward trend again. I'll keep you posted.

So I went to the doctor and have new results not really anything to worry about, I had VERY high ck levels in my blood but we figured out it was most likely caused by working out my muscles. I had just recently started working out that weekend before getting my labs and my muscles were extremely sore for a couple days, which caused my ck levels to rise sharply so everything seems to be ok now. Also my stats changed my with the new labs I'm now at CD4's @ 239 and my VL @ 100 which is a slight rise from my preveious VL of 80. Other then these changes my body feels really great & I have no side effects so hopefully no third eye will grow soon, lol.

I just got my 6 week CD4's back, and they're basically where they were two weeks ago. I'm now at 220. So it looks like both Rene and I got a nice initial bump up after the first two weeks, but then we settled back down a bit lower (though still higher than the 166 count I started with). I guess it may take a while to get those suckers up!

Welcome Iggy! & Hello Nash, I wouldn't worry too much about your VL ur still pretty low like Iggy said it takes a while for our bodies to get comfortable with these meds so just give it some time and lets see where it takes us.

Are either of you taking any vitamins if so what?

I know they do help just like working out, maintaining a positive attitude(no pun intended, lol) , keeping a healthy diet and avoiding avoiding alcohol or drugs is very important. Alcohol or illegal drugs causes your body to have many free radicals and HIV just thrives on that so if ur doing any of those things and ur poz its something that we should all stop immediately.

In any case wishing you both well stay in touch blood brothers.... lol

I know they do help just like working out, maintaining a positive attitude(no pun intended, lol) , keeping a healthy diet and avoiding avoiding alcohol or drugs is very important. Alcohol or illegal drugs causes your body to have many free radicals and HIV just thrives on that so if ur doing any of those things and ur poz its something that we should all stop immediately.

I take a generic Costco brand (Kirkland Daily MultiVitamin Pack) and have always prior and since infectioon believed in the importance of them.

It's funny that you bring up alcohol as I had my first sort of ancillary side effect from the meds... I've learned the hard way that my alcohol tolerance has been reduced and my stomach is a little more tempermental after some mimosas at Sunday Brunch and a few scotch and sodas that evening.

Very stupid, I know, but now I know first hand while one is strongly advised to watch the alcohol intake when starting meds.

On that note, Miami & Nash - I hope you guys are doing well so far - and on that note, I just realized that with many of my friends have always called me Brooklyn, so between the three of us in the study, we got the cities covered.

I guess I got the good stuff in regards to the extended release as my stomach went a major gurgling and I was quite happy to have stocked up on toilet paper at Costco recently. Was up till about 1:00 a.m. in the bathroom reading every magazine we had - and on a related note decided we needed to subscribe to the Journal of Foreign Affairs and the New Yorker.

Some small temporary flushing and flaking in the face that passed within a few hours too.

I know this is all a temporary period of my body getting used to the meds so not very concerned, but just wrote down to get another 24pack of Charmin on the shopping list just in case.

Sorry to hear about your intestinal distress. Hope it'll calm down for you soon. I have a feeling that I am NOT getting the extended-release formulation, as I didn't have any particlar reaction upon going on the full dose, but I guess only time will tell. Hope those numbers start looking good too!

Thanks for the update. Been wondering how you were doing on the combo!

It looks like things are heading in the right direction for you, though perhaps a bit more slowly than you would like. My last labs showed that I remained undetectable but that my t-cells were back down to 230. Of course, I'd prefer that my CD$ count would rise a bit faster, but at least I feel fine. No side effects at all, and my energy level has been generally good...

I am also in this study and things are going pretty well with a few exceptions. I developed a rash which for now I have under control with Prednisone. My biggest issue is sleep. I would really appreciate any feed back if this is an issue for anyone on this trial and what you might have found to work that will not jeopardize remaining in the study group as they seem so particular about what you can and can not do. Getting the Prednisone approved was a major issue with my primary and specialist and he doesn't seem to really give it much thought, the lack of sleep. I on the other hand need some sleep, more than the four or five hours or less that I am getting. Running on empty here. Thank you in advance.

I'm sorry for the delay in responding, but has the sleep issues continued? I haven't had sleep issues per se because of the V+T but I had in the past and my doctor does allow me ambien (6.5 mg). Perhpas Since I was already taking the ambien, I never noticed any sleep issues.

As far as the rash. I only had one day when my scalp was extremely sensitive, but happily a regular OTC conditioner worked for me.

Thank you for the welcome! Sleep is a little improved, and really I should not complain. The rash looks to be another issue but I will have a better vibe on that in the next couple of days as I come off the Prednisone and switch to Claritan which might help. What is new is that I constantly have this urge to go to the bathroom which is not like me, I could hold it hours before. I will discuss that with my Doctor when I see him next, which is every two weeks. I have posted my latest results, some good, some not so good, but I am hopeful the next will be better. Take care.

Glad to see you joined us in this thread and for posting your numbers.

Your CD4's were particularly low at the start of the trial (as was your VL high) so I am not surprise for the rapid rise followed by a small drop in CD4's right after you started treatment though your viral load continues to decrease which is a good sign.

Do you know your %'s? Also are you on the half dosage 200 mg or have you yet started the full 400 mg of Viramune?

Glad to see the improvement in the sleep and hoping the rash clears up. A long time physical technique advocated on the board is to use Neutrogena T-Gel extra strength shampoo as a body wash for regularly occurring dry and itchy areas. Hopefully though the claritin will help as well.

As for the bathroom issues - I noticed that myself for about 1-2 weeks when I switched from the 200 mg to 400 mg dosages of Viramune. It has long since passed though.

I'll be posting my latest results tomorrow which will be my second results as of the full 400 mg dosage.

Thanks Iggy for the feedback. The rash is still there, it is actually like hives, welts if you will and sometimes they itch and sometimes they don't. They are itching now like crazy which is why I am here and posting at 4 in the morning. I have tried to monitor when they start itching in the hopes of seeing if I am doing something to trigger them on but have come up with zero. I have decided to see my doctor today if they don't improve, he doesn't seem to think it is an issue which is frustrating and I am thinking that he may not be able to see past the numbers and the study. I try to remind myself that the side affects could be worse but I guess I will not be winning an Oscar anytime soon.

Glad to hear that you are doing well and that your side affects have mostly passed. Looking forward to seeing your new numbers. Might be the inspiration I need to stick with this for a bit longer. Take care!

I think you are right in seeing your doctor today, and be clear with him that it is an issue to you. I honestly do not know what he can specifically do to alleviate the rash, but I do hope that it is something that will be controllable.

David Evans, from this site, has actually reported on the issue of the Viramune Rash that seems to be more common and an issue for those on the twice a day dosage of the med. I'm hoping he might be able to pipe in here with any new information (a fat NYC pigeon is going to whisper in his ear btw)

Please let us know what happens after the doctor visit.

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Looking forward to seeing your new numbers. Might be the inspiration I need to stick with this for a bit longer.

My latest numbers aren't in the inspirational zone at first glance as they are basically the same as last month's numbers.TestNew #'sPrevious #'sCD4 308 302% 21.1 21.3VL 767 498

I was informed following the results that I shouldn't necessarily be worried about the slight rise in VL (I wasn't) though if my next labs come back with a continued rise that we will have to move up the date of my next labs and possibly recheck resistances as a precaution.

Frankly I recognize that my body already had a very healthy reaction to the meds thus far and that I think that the basic maintaining of the low VL in general (particularly after I had a 2-3 week nasty cold that knocked me out) is significant in itself.

I hope if I offer any inspiration with my numbers, it is my reaction to them: it is a process that requires adherence and patience and barring an unforeseen resistance issue that wasn't previously detected, I know I'll get my undetectable VL soon enough.

Hope that helps and please do let us know about the outcome of your doc appointment today.